Quality standard

Quality statement 5: Mental health and wellbeing

Quality statement 5: Mental health and wellbeing

Quality statement

People with epilepsy are asked about their memory, mental health, and social and emotional wellbeing at epilepsy appointments. [new 2023]

Rationale

Good epilepsy care is more than just control of seizures and should address the whole person, including their mental health and wellbeing. There is a higher prevalence of mental health conditions, and a higher risk of suicide, in people with epilepsy than in the general population. Some treatments aimed at controlling seizures can have adverse effects on mood, memory (cognitive function), behaviour and alertness. Also, receiving a diagnosis of epilepsy can have a negative impact on a person and their quality of life. Asking relevant questions as part of epilepsy care can help identify comorbidities and adverse effects of antiseizure medications to enable appropriate interventions and treatment adjustments.

Quality measures

The following measures can be used to assess the quality of care or service provision specified in the statement. They are examples of how the statement can be measured, and can be adapted and used flexibly.

Structure

Evidence of local referral pathways between epilepsy services and mental health, neuropsychology and educational psychology services.

Data source: Data can be collected from information recorded locally by provider organisations, for example from service specifications. The Royal College of Paediatrics and Child Health's Epilepsy12 audit of seizures and epilepsies for children and young people contains information on trusts that have referral pathways for children and young people with epilepsy who have mental health concerns.

Process

Proportion of epilepsy clinic appointments in which people are asked about memory, mental health, and social and emotional wellbeing.

Numerator – the number in the denominator in which people are asked about memory, mental health, and social and emotional wellbeing.

Denominator – the number of clinic appointments for people with epilepsy.

Data source: For adults, data can be collected from information recorded locally by healthcare professionals and provider organisations, for example from patient records. For children and young people, use the Royal College of Paediatrics and Child Health's Epilepsy12 audit of seizures and epilepsies for children and young people Performance Indicator 6 (percentage of children with epilepsy for whom there is documented evidence that they have been asked about mental health either through clinical screening, or a questionnaire or measure).

What the quality statement means for different audiences

Service providers (adult and paediatric epilepsy service providers) ensure that epilepsy professionals are offered training to identify signs of mental health conditions or decline in mental health. They develop referral pathways with mental health services to ensure access to more specific assessments and treatment. They ensure that epilepsy appointments include discussions about memory, mental health, and social and emotional wellbeing.

Healthcare professionals (neurologists, paediatric neurologists, paediatricians, epilepsy specialist nurses) ask people at epilepsy appointments brief questions about their memory, mental health, and social and emotional wellbeing. They liaise with GPs, advise on how any problems can be addressed and, if necessary, make onward referrals for specialist assessment (for example to neuropsychologists, mental health teams and educational psychology services).

Commissioners commission epilepsy services that discuss memory, mental health, and social and emotional wellbeing. They work with service providers to develop referral pathways between epilepsy and mental health services. Integrated care boards develop improvement plans in line with NHS England's National bundle of care for children and young people with epilepsy. These include ensuring that processes are in place for all children and young people with epilepsy to be routinely screened for mental health difficulties at the point of diagnosis and in subsequent annual reviews (bundle of care 'Mental Health 1' recommendation). They map provision of, and referral pathways to, relevant mental health providers and services within their system, identify gaps and develop plans to address any gaps (bundle of care 'Mental Health 2' recommendation). They identify providers that do not have mental health care integrated within the epilepsy service and develop plans to mitigate this risk by developing appropriate pathways into mental health services (bundle of care 'Mental Health 3' recommendation).

People with epilepsy are asked about their memory, mental health and wellbeing at epilepsy appointments to assess their general health. They are advised on how any problems can be addressed and are referred to other services if more specific assessment, treatment or care is needed.

Source guidance

Epilepsies in children, young people and adults. NICE guideline NG217 (2022), recommendation 9.2.2

Definitions of terms used in this quality statement

Asked about their memory, mental health, and social and emotional wellbeing

Asking people about memory, mental health, social and emotional wellbeing involves asking brief questions to explore these areas such as:

  • Have you noticed any difficulties with your memory since the previous appointment? If so, do you think that things are getting worse?

  • Have you felt down, depressed or hopeless in the past month?

  • Have you been bothered by little interest or pleasure in doing things in the past month?

  • Have there been any specific psychosocial stresses that have affected your health since the previous review?

Formal or specialist assessments, such as an assessment of cognitive function, are not included. [Expert opinion]

Epilepsy appointment

This includes planned appointments with an epilepsy professional, such as regular monitoring reviews, patient-initiated monitoring reviews and specialist nurse appointments.

Some appointments may need a specific focus, such as appointments focused on medicine changes, medicine dose changes or alterations to the emergency care plan, and it may not be appropriate to ask these questions at such appointments. [Adapted from NICE's guideline on epilepsies in children young people and adults, recommendations 4.5.1, 4.5.2, 4.5.4, 11.1.3 and expert opinion]

Equality and diversity considerations

People with epilepsy who are older, have other complex needs (such as other comorbidities), or who do not read or speak English should have their information and support needs taken into account. This could include:

  • giving longer appointments to allow more time for discussion

  • providing information in different formats, such as easy read, large print or audio versions

  • providing information that is accessible to people who do not speak or read English, and is culturally appropriate

  • involving family members, carers, an interpreter or an advocate if the person wishes (see NICE's guideline on advocacy services)

  • sharing information with those involved in their care, if appropriate.

For people with additional needs related to a disability, impairment or sensory loss, information should be provided as set out in NHS England's Accessible Information Standard or the equivalent standards for the devolved nations.